You Can Be Heard, Without Feeling You Have to Disclose Your HIV Status

During the opening plenary at AIDS 2012 Phill Wilson, President and CEO of the Black AIDS Institute, delivered a highly passionate and inspiring speech to help kick off the conference. During his speech he called for all people living with HIV to reveal their status to help end HIV stigma. He did say that for some people this isn't possible because of certain issues. I worryingly see a movement in the making asking people to come out as HIV positive and this concerns me.

People tell me all the time that they wish they could be like me and be open to the world about their status. My reply is always the same and one I'd like to say to anyone considering coming out. If you feel you can safely do so and it is a well thought out decision considering all the possible circumstances and repercussions, then great. But don't reveal your HIV status because you feel that you need to do this solely to fight stigma or to support people living with HIV. The consequences of coming out as HIV positive will be YOUR consequences. You have to live with them. Don't feel pressured by a sense of responsibility to other people with HIV. The idea of supporting each other through disclosure is a beautiful thought and we CAN be there for each other. But at the end of the day, you're the one who has to deal with it in your day-to-day life.

In my life it was possible for me to scream to the world that I have HIV. I have no kids that will suffer from my continual disclosure. My family accepted it from the beginning as just something we have to live with. My friends would be my friends regardless of HIV and I knew that before I told them. I had no career to protect. I don't live in a small town. Coming out for me was safe enough and an easy decision for me at the time.

This is not the case for everyone. To some, as we know, disclosing their status can lead to losing the support of family and friends. It could mean the end of a job they need, or love, or a hostile environment at work. It could mean facing scorn and judgment on a daily basis from neighbors. Plus your kids or partner could have to deal with the stigma as well. For some, disclosure may mean various legal issues. Let's not simplify coming out as a necessity to rid us of stigma. It may reduce it if enough people came out but stigma will continue to exist on some level regardless. Does that mean we should accept it? Hell no. Does that mean we shouldn't be willing to deal with a few difficult situations here and there? No. But if coming out is going to jeopardize the safety and security of you and yours, don't make your decision based on a need to "do the right thing," because the "right thing" is what works for you.

Advertisement

Yes, stigma is important to fight. We all experience stigma and it ensures that HIV will continue to be spread by making people afraid to get tested. If every person in the country with HIV disclosed their status freely it would likely significantly decrease the stigma of living with HIV. If you feel that you want to help decrease stigma by coming out as HIV positive then that is a wonderful brave thing for you to do. But please do not feel that you have to out of loyalty and support for people living with HIV. There are other things you can do.

I've always felt and advocated very strongly that ALL people with HIV should do something to help fight HIV in some way. It is our lives and our destinies at stake. We are alive because many, many people fought for us. They gave their health, their safety, their freedom and some even their lives to ensure that we survive. You can help ensure that we continue to not only survive but thrive as people living with HIV. You can help make things better and even help to end the HIV pandemic. There are many ways to do this, both big and small. This does not mean you have to tell the world you're positive or become an activist fighting on the frontlines.

Some of us demonstrate, some of us are treatment activists, some of us lobby Congress, and some of us spread awareness. Some of us dedicate most of our lives to ending HIV. You don't have to do this but you should do something. Everyone can do something. Even if that means simply signing a petition or writing a letter to your representative to support a bill that benefits people with HIV. YOU CAN BE HEARD. Especially if you belong to a group of people such as a support group, or a hub, or some type of program where there are a lot of HIV positive people -- a lot of signatures together are powerful. YOU CAN BE HEARD and you should be heard. This does not mean that you have to reveal your status. Signing a petition can be done under an assumed name. Create a new email address to use. A letter to your representative can be sent with your first name or a made up name using a street in your neighborhood (so they know you're a constituent) and a few lines of why you choose to be anonymous. Spend some time online in chat groups supporting newly infected people. Everyone can do something, no matter how big or small, and everyone should. People have and continue to do this for our collective benefit; we can all give back in some way.

Some people do choose to give more, to give it their all to fight this plague. As someone who has been an HIV activist for a while, it's wonderful to see so many new activists finding their way. Many are dedicated, passionate and have a fire that hasn't been seen in years. I'd like to say a few things to these individuals.

First, always stay true to yourself. If you become really involved as an activist you will come up against the status quo often on many different levels. Don't ever be afraid to speak your mind because what you have to say is valuable and should be heard. Being an activist, a true activist, can be a lonely place sometimes. The more experience and knowledge you gain, the more angles you see to everything and the more you figure things out. HIV is complicated. The disease itself is complicated. The HIV epidemic and pandemic is extremely complex. There are few simple answers. Things are not always black and white. It's a continual learning experience. Learn and listen, don't stop at what seems obvious or basic because everyone else is doing it. Be innovative. Make your own decisions; don't follow the crowd unless you are sure they are going in the right direction. We don't have all the answers so search for new ones. Make your voice heard but first make sure you fully understand the issues. If you decide that you want to be a leader, first learn how to lead by reading everything you can, talking to people with experience and thinking through the issue.

Second, straight up -- don't be a fame-whore. There seems to be this new trend in the last couple years towards HIV super stars. We are not public figures or celebrities. An activist is someone who fights for a cause, not for the glory. I find this truly offensive as a person living with HIV. We're all equal, none better than the other. If your concern is consistently getting your picture in as many publications as possible to "tell your story" without providing any guidance, information or facts about anything other than yourself, you might want to check your motives.

I'm not saying that everyone who promotes awareness by using their own story falls into this category and are in it primarily for themselves. A lot of genuine, caring, well meaning people share their stories and this is a great thing. Doing so helps countless people learn about HIV and makes those out there that feel alone, feel as though they are not, that there are others going through the same thing. Doing so also puts a face to HIV and evokes lots of feelings from people who have an off color image of people with HIV. But this has to be done in the context of US not ME.

What I am saying is that there are some that care more about attention and praise than helping people. Make sure it continues to be about HIV and people with HIV, not about you as an individual. This may sound cold but how can we exist and thrive as a community if there are those among us that put their own egos above everyone else? A person is no less important who struggles every day to get out of bed than someone who is visible and tells you about their struggle. We all matter and no one is more important than anyone else. Do your thing with pride but don't lose your humility. When enough people are clamoring for the spotlight instead of doing the hard work that comes with it, everything becomes convoluted. People begin to think that this is the way it should be and that's wrong; being an activist should be a selfless act.

Third, please consider focusing your work on finding a cure if this is an area you feel you could be helpful. We need more activists with the focus of ending HIV through a cure. You don't have to learn the science of HIV but do try to get to know the basics. There are many things you can do to support the fight for an HIV cure. For instance, follow legislative initiatives focusing on funding for HIV research, support it as much as you can and tell others about them. Call members of Congress or write them letters asking them to support these initiatives. Talk or write about the need for an HIV cure or share information and articles about developments in cure research. You never know who might see your posts or blogs and become inspired or pass them on to someone else who can make a difference. Create or sign petitions and help get others to sign. Follow organizations that are fighting for a cure and support them in any way you can. Ask them what you can do to help. Initiate or join a demonstration for more cure research. Ask, ask and ask again people involved in searching for the cure what you can do.

We can all do our part no matter how big or small. This doesn't have to include revealing your HIV status. We should continually fight stigma whenever confronted by it and in general, but not by risking ourselves if it's not safe or wise to do so.

(Please note: Your name and comment will be public, and may even show up in Internet search results. Be careful when providing personal information! Beforeadding your comment, please read TheBody.com's Comment Policy.)

Please do not modify the following input field.

Your Name:

Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining:

Please note: Knowledge about HIV changes rapidly. Note the date of this summary's publication, and before treating patients or employing any therapies described in these materials, verify all information independently. If you are a patient, please consult a doctor or other medical professional before acting on any of the information presented in this summary. For a complete listing of our most recent conference coverage, click here.

The Body is a service of Remedy Health Media, LLC, 750 3rd Avenue, 6th Floor, New York, NY 10017. The Body and its logos are trademarks of Remedy Health Media, LLC, and its subsidiaries, which owns the copyright of The Body's homepage, topic pages, page designs and HTML code. General Disclaimer: The Body is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through The Body should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.